Crosstalk between Doctors, Ethicists, and Economist for the Good of Neuropediatrics
Aims: Goal setting in Neuropediatrics has not only to take account of what is technically feasible, scientifically proven, and economically possible but also of what is ethically acceptable.
Methods: The bioethical principles of autonomy, beneficence, nonmaleficence, and justice, adapted to the specific triangular relationship between the maturing child, whose care taker, and whose doctor are slowly replacing the traditional framework of paternalistic decision taking. On the basis of several clinical vignettes, we will show how the proclaimed “right to health”1 can be differently interpreted according to what kind of particular public health policy is followed. Noninvasive prenatal testing (Praena) or preimplantation genetic screening has the potential to endanger the nondiscriminatory approach of the UN-Convention on the Rights of Persons with Disabilities. Data sharing in large biobanks can be an efficient way of gaining valuable diagnostic and therapeutic knowledge but bears the danger of interfering with the right to privacy and future access to associated data.
Conclusion: Ethical dilemmas, such as, the ones mentioned, should be brought into the open to raise awareness of the complexities of the issues involved, they should be used in the training of young doctors and to question existing and newly formulated guidelines with the final goal of securing long-term public support for our work within neuropediatrics.
Keywords: public health, ethical dilemma, bioethical principles.
Reference1 Committee on Economic, Social and Cultural Rights. The right to the highest attainable standard of health: 11/08/2000. E/C.12/2000/4, CESCR General Comment 14. Twenty-second session Geneva, 25 April 12 May 2000 Agenda item.